I have not being doing the things lately that I like because I’m too busy with the things I have to. My disability has a big role in that. It seems like a long time but after six years I’m still learning to live life being three quarters paralyzed.
It’s not easy living inside a paralyzed body (talk about stating the obvious!).
I get up every morning (Monday-Sunday) at 8am to maximize my days productive. Everyday I try and achieve goals although minor to others, enormous to myself and my three quarters paralyzed body.
Simple tasks like transferring independently throughout the day(videos on my Instagram), doing my standing programme alone everyday to maintain my health and executing my daily exercise plan wind, rain or sunshine. I have learned through years of practice how to manoeuvre the broken footpaths,the stifling curbs throughout town to run my daily errands and this workout has not gone unnoticed by my shoulders either.
In order to get to medical appointments, education, interviews and social activities (which have become bottom of the list in regards how I prioritise my hours and strength unfortunately), I must hold back some of my 34 hours of help a week. This forces me to live on less than the bare minimum in order to be able to get to appointments which can be in Dublin, to attend family or other social events. Daily I struggle with the balance of finding the fine line between doing tasks myself to the point of physical exhaustion inorder to save my allotted time. Also great family and friends help out but it is difficult when I live more than an hour and half from them.
It is coping with all the responsibilities that come with life; managing finances, meeting deadlines, along with organizing and learning to co-ordinate the people who are assisting with daily challenges, liasing with big ruling bodies for example the HSE in order to live a self ruling life.
All this organising, planning, it can feel like I’m running an multinational healthcare company just to stay a live. However, the difference being their work may not only provide money to support a certain lifestyle (such as having a family, home, a car, etc), but may also give a sense of identity, achievement, optimism, social connections, and role modeling associated with employment. These factors are not a reality for me and although I work hard each and every day the above psychological factors of well-being which provide a sense of purpose and accomplishment are few and far between for myself.
This sometimes makes me feel like a failure. But I’m doing the best I can with what I have and that’s all any of us can do and this I need to keep at the forefront of my mindl. Therefore, comparing achevements and goals with others can lead to questioning our own approach to such. Perhaps we put too much pressure on ourselves to conform to others standards, berating ourselves if they don’t work for us. Ultimately, our path must be conducive to ourselves as individuals because we’re all actually quite different.
After my life altering event I prioritized what makes me feel well-rounded, happy and fulfilled and focused on that. For me that was rebuilding my independence as much as possible. The next leap is my home and career hopefully!!!